Hove toddler who loses control of breathing 'could live normal life'

Casper Oakley-Roberts was born with a condition which means he loses control of his breathing when he sleeps.

He needs a ventilator whenever he is asleep.

Now his parents say they have nearly reached the first big milestone in their mission to make a device which would help Casper and others like him gain their independence and have a normal life.

James Oakley, who helped set up the Keep Me Breathing charity with partner Stephanie, said: “Casper is doing really well, he is walking around now and he has started to mutter his first sounds and words. He’s generally really happy and when he is happy we are too.

Casper requires mechanical ventilation when he sleeps (Image: Stephanie Roberts)

“This pacemaker would mean he could run a marathon or play sports and live a normal life. He could go round to a friend’s house for tea without a carer or a nurse.

“It’s really exciting to be this close but because we know things are falling into place it makes you feel more desperate.”

Two-year-old Casper was born with congenital central hypoventilation syndrome, a rare genetic condition which means he loses control of his breathing when he falls asleep or loses consciousness.

Fewer than 2,000 people worldwide suffer from the condition.

The toddler currently needs constant overnight care but James and Stephanie, both 34, from Hove, hope that a breathing pacemaker could be a reality by 2028.

They set up Keep Me Breathing to bring together experts from the University of Cambridge and across the world. They hope to create a device which could control the breathing of CCHS patients like Casper when they sleep.

James said they have so far raised over £400,000 of their initial goal of £500,000. By reaching that target they would then be eligible for grants which would help to support the total cost of the project, estimated as high as £20 million.

James said more progress had been made in the last year than in the past 50 years of research.

Casper, centre, with parents James and Stephanie and brother Max (Image: Stephanie Roberts)

In the best case scenario, the first trials of the breathing pacemaker in humans could take place as early as 2026 with a final product available in 2028.

James and Stephanie hope that Casper would be able to benefit from the pacemaker by the time he is seven years old.

 James will be among 45 runners raising money for Keep Me Breathing in the Brighton Marathon on April 7.

The charity will also host a gala at the Findon Place estate on April 27 with the hope that the event will push it over the £500,000 threshold.

All proceeds from the ball will go to the charity including an auction to win prizes including featuring in crime writer Peter James’s next book.

Donations to the charity can be made on the charity's website.